MS Awareness Month – A Personal Experience with Infusion Therapy

Oh! The irony….

The first stick today at the infusion center was in a vein just below my wrist staight down from my right thumb. It stung like crazy. The nurse, a very happy, kind young woman in her 20’s had to move the IV to the left side of my left arm. I was well hydrated, but for some reason, I was extra sensitive to the pokes today.

After the premeds of solumedrol (a steroid for inflammation reduction) and Benadryl (for prevention of possible allergic reactions to the medication) were given and when the 30-minute wait time was over, it was time to start infusing the half dose of a new medication my neurologist prescribed because of the increased MS symptoms I was experiencing and the three new lesions seen on my recent MRI. The stress of the past year has definitely taken a toll on my body.

Ocrevus is a medication which is initially infused twice, 14 days apart, and then as an infusion every six months to reduce the symptoms and number of future MS relapses. There is not a cure for MS, but the medication can be helpful in slowing the progression of the disease.

My arrival time was 9AM this morning. Riding in the elevator in silence with my husband to the second floor was not intentional. The closer we got to the infusion center the more nervous I felt. The elevator doors opened and we walked straight ahead and took the jog to the right. Behind the glass door that we walked through into the infusion center, sat a very bubbly blonde girl behind the desk She was eager to help us feel welcome. I recognized her voice as the one who scheduled the appointment with me and called me “Sweetie” before hanging up the phone last week. Someone younger than yourself should NEVER call you “Sweetie.” It feels disingenuous and condescending, in my opinion. She, however, was very friendly and did help us feel very welcome.

The room that was going to be mine for the next 7.5 hours was inviting and even had a homey feel to it. I was directed to sit in the big dark brown leather recliner. My husband sat in a very nice cloth wing-backed chair on the other side of the end table placed between the two chairs. On the wall in front of us was a large TV hanging above a side board with drawers where the nurses accessed the necessary supplies. It was the same width as the TV. The TV was displaying a beautiful cozy sitting room with a fireplace and all kinds of St. Patrick’s Day decore dispersed about the room which gave a bit of a wimsical feel to the coziness.

The normal medical history questions were asked and answered. When the nurse asked me, “How do you sleep at night?” I could not help my response, “With my eyes closed.” She laughed like she knowingly had that coming. All of the nurses were kind, helpful and reassuringly stated they have very few people who have reactions to the medication.

Well, I had a bit of reaction, so the medication was stopped for 30 minutes and restarted at a lower dose. I started to feel shaky so the nurse brought a string cheese and an apple juice for me. By then, it was late enough that she let me choose a lunch to be delivered by Uber, which was paid by the infusion center. That was a nice perk of choosing them, (if you can call it “choosing” when they were the only one that was in-network with our insurance).

The remainder of the infusion ran smoothly. The nurses checked my vitals every 30 minutes. My blood pressure, oxygen, and pulse were good the entire time. At 4:30PM we walked out toward the reception desk. I stopped in the hallway where I let the nurse know that I was experiencing some double vision in my left eye. She said if it got worse or if I started to have new symptoms that I should go to the ER. One of the other nurses will give me a call tomorrow to check on how I am doing. When that call comes, I hope to answer while at work, since I am feeling better tonight. It is nearly 11:30PM, and I am wide awake. It comes as no surprise because of all the napping I did today, thanks to the Benedryl.

Timing is Everything

Daily writing prompt
Who are your favorite people to be around?

Roundabout a Jump Rope

Our small city has several roundabouts strewn about the roadway system. Some brilliant person thought these would make progress through these intersections quicker than a 4-way stop.

OR…

The minds who came up with this plan were great jump ropers in their childhood and thought this would be the perfect way to keep that memory alive. You know, when two friends each hold one end of a jump rope and turn it so you can jump to your hearts content. The trick was to have perfect timing– to enter the center jumping area just as the rope was moving away from you so you would be in place as the rope made its way over and back around to the ground where you could jump over it. Jump…jump…jump.

You were a GOOD jump roper if you could do that. And, if that is not enough fun, they would turn the rope faster so you could jump “double time” which meant you were a GREAT jump roper. Even better than that, though, was when they would add a second rope and turn them opposite directions. If you were a double-dutch jump roper, you were AMAZING! Those friends who added tricks as they jumped were SUPERB!

When I approach one of these wonderful (too small) round-abouts, I approach with the thought “timing is everything” and I know I have to get my timing just right to enter so the car coming from the left is not too close, but that the traffic to my right is not ready to pull out in front of me as I make the drive around the loop. I can’t wait too long so as not to upset the driver behind me who is impatiently awaiting their turn. I have to make sure I am in the correct lane as I enter so I am in the lane I need when I exit, so as not to miss my right turn into the Costco parking lot. I haven’t figured out if I am good, great or amazing at this challenge, but the one thing I do know is… Timing is everything!

Not Good Timing

In March of 2023, my husband and I went on our first cruise with my sister and her husband. The first morning on the ship I realized I forgot my daily medication I was taking at the time for MS. It was a good thing my doctor just the month prior talked with me about a world wide conference he attended in the fall over in Europe. He said they reiterated that people over 50 who are on my prescribed medication have an increased risk of infections that can land them in the hospital. He said I should think about coming off of the medication. I was already in my late fifties. So, it was good timing that I forgot my medication when I did. I simply quit.

The year 2024 was the most stress-filled year I have had in my entire life. I experienced extreme emotions that were a rollercoaster that took me from the lowest lows to the highest highs and back again. Stress the playground for MS to explore and attack. Myelin sheaths beware. Riding the rollercoaster of high emotions and stress was not good timing without the protection the medication.

The MRI this month of my brain, neck and T-spine showed new lesions at all three levels. Two levels are active lesions, which means they occurred within the last 3-4 months. At my appointment with my neurologist this week, it was decided that I should go on a new medication to keep the MS attacks or exacerbations to a minimum. Apparently, having a “youthful” immune system in my situation is not a good thing.

A call came today from the company that makes the poison that will be infused into my body every 6 months beginning in March. The good news is that the medication is so expensive that I qualify for a “copay assist program” that will help pay for my copays, which means it will help with any deductible and out of pocket expenses I might incur from taking this medication. That is great news, but it would have been better news in January. Too bad the new and increased symptoms I have been experiencing these past few weeks did not happen in December of last year when my deductible was met, so the MRI would not cost me anything and the infusions could have started in January so my deductible would be met in January each year. Indeed, timing is everything.

Next month is the soonest I will be able to start treatment. I hope that is soon enough to prevent additional lesions from forming in my brain and spinal cord. This anxiety needs to calm down so I can enjoy whatever my future has in store for me with the best health possible at this point. There is a lot of good life to live!